A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Tuesday, October 15, 2013

Research is the Hope of the Future

October is Niemann Pick Disease Awareness Month

The research funded by the NNPDF is made possible in great part due to the efforts of our member families and their extended support networks via local community-sponsored events, and to the support of the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF).

The NNPDF is truly grateful for this support!

Our most recently funded Fellows & Research Grants are:
  • Dr. Charles Vite – University of Pennsylvania (Grant)
  • Dr. Deepti Gadi – Weill College of Cornell University (Fellowship)
  • Dr. Stephanie M. Cologna – National Institute of Health (Fellowship)
  • Dr. Lluis Samaranch – University of California (Fellowship)
  • Dr. Andrew Munkacsi - Victoria University, New Zealand (Fellowship)
  • Dr. Dorthea Maetzel - Whitehead Institute/Cambridge (Fellowship)

    To view their current research, labs and biographies: 
Click Here for Fellowship
Click Here for Research Grants

All the money raised by the two fundraisers listed at the top of the page go to fund further research.

But there is other research being conducted around the world.

Dr. Maria Dolores (Lola) Ledesma

Dr. Maria Dolores (Lola) Ledesma
NNPDF Scientific Advisory Board Member 

A current member of the NNPDF International Scientific Advisory Board, Maria Ledesma continues on with her stellar research in the area of NPD Type A & B (ASMD) patients. 

Below is her presentation at the 2013 NNPDF Baltimore conference titled:  How does Acid Sphingomyelinase Deficiency Impact the Brain? 

Click here to view Dr. Ledesma's August 2013 presentation (PDF)


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